Pancreatic Cancer Survivor

I reflect in the Huffington Post today about our decision to launch the most successful pancreatic cancer advertising campaign ever 4 years ago! “While no early detection test exists, raising awareness of pancreatic cancer is the first step towards early diagnosis and, ultimately, to save lives. “This is why, in 2014, we took the decision to run with an advertising campaign that promptly put pancreatic cancer into people’s consciousness across the globe …

You will see that on social media and via our website, we often use a purple pansy as a symbol, and many ask, “Why the purple pansy?”

Well, it all started in 2010 when I founded Pancreatic Cancer Action, using the pansy as a logo, and continued to use it until 2015 until we re-branded.

However, I had and still do have, a sentimental attachment to the pansy and I didn’t want to lose it completely. So, we decided that we would use it for a very special purpose; to remember those who we have lost to pancreatic cancer.

It all started with the colour purple. Some, all or none of you may know that purple is the internationally recognised colour for pancreatic cancer. Pancreatic cancer charities in the USA universally adopt the purple colour in their branding. Other pancreatic cancer organisations in the UK and abroad have also adopted purple as their brand colour. We have all seen what pink can do for breast cancer, so the thought was that maybe purple can do the same for pancreatic cancer.

So, we have the colour and we are a charity in the cancer sector. Surely we needed a ribbon, didn’t we? Well, we could, but the ribbon, to me, doesn’t say anything other than cancer. And while we are an organisation dealing with cancer we are also dealing with other things too such as awareness and survival.

Why the pansy?

Although it is found in other colours, the pansy fits the purple theme rather nicely and what is even more special is that it flowers during November (the winter variety anyway), which when we have Pancreatic Cancer Awareness Month.

However, while the pansy ticks the boxes on colour and flowering time, to me the most important symbol of the pansy that it is a living thing. Having a living thing as a symbol is important, as I want it in itself to convey a message of hope.

The main focus of our work here at Pancreatic Cancer Action is to improve early diagnosis of the disease and that means shouting about the dire survival rates, the fact that nothing has improved for nearly 50 years, the underfunding of pancreatic cancer relative to the disease burden and to stop pancreatic cancer from continuing to sit in the shadows of public consciousness.

What the pansy pin means to me…

While the statistics confirm that survivors are in the minority, there are those who, while facing the disease, have helped campaign and raise awareness for us and have been the most amazing advocates we could ever hope for. Which is why we at Pancreatic Cancer Action can never forget them. While some patients are just too unwell to take on an advocacy role, their close family members often step in and, when their loved one has passed away, continue to raise awareness and funds in their memory. We are grateful to each and every one of them.

The PCA Pansy Range

It is for those lost to the disease and in thanks to those who are tirelessly raising awareness of pancreatic cancer that I am currently wearing my purple pansy pin and I will be especially on World Cancer Day on 4th February.

Researchers at Barts Cancer Institute, London, have recommended that all women over 30 should be tested for BRCA gene mutations. Published in the Journal of the National Cancer Institute last week, the study estimates that if this recommendation is implemented, tens of thousands of lives will be saved.

The researchers claim that routine screening for the BRCA mutation will pick up those women who either do not have or are not aware of a family history of those cancers and could save tens of thousands of lives.

BRCA, often referred to as the breast cancer gene, mutations can occur in around two per cent of breast cancer cases and three per cent of ovarian cancers.

No matter what your thoughts are on the validity and indeed costs of such screening, it is certainly an area for more in-depth evaluation.

What is interesting is a Canadian study published in 2015[2] found that of those who were BRCA1/2 positive they were no more likely than patients without the mutation to have had a previous diagnosis of either breast or ovarian cancer and, half of them did not have a strong family history of breast or ovarian cancer.
So, testing patients merely on the basis of family history could mean a lot of people who are BRCA1/2 positive could be missed – the point being made by the Barts Cancer Institute in their recommendation for widespread screening of women over the age of 30.

What is the BRCA gene?

BRCA1 and BRCA2 help stop cells becoming cancerous by producing proteins that fix damage to our DNA. All of the cells in our body undergo a daily cycle of DNA damage and repair. Faulty BRCA genes can reduce our ability to repair DNA damage. This means that DNA, not properly repaired, can cause cells to become cancerous.

BRCA1/2 mutations are publically known about for women with breast and ovarian cancers, but both men and women can inherit a ‘faulty’ BRCA1 or 2 gene from either their mother or father.

It is important that medical professionals such as GPs and oncologists along with the public are aware of the association between risk of pancreatic cancer and being BRCA1/2 positive. BRCA2 mutation carriers have a 3.5-fold risk of developing pancreatic cancer[3] Women with BRCA 1/2 mutation have been shown to have a 2.4-fold increase in incidence of pancreatic cancer[4]

What is also interesting, is that research is suggesting the possibility that those pancreatic cancer patients with the BRCA1/2 mutations who are treated with PARP inhibitors (Poly-ADPribose polymerases which are a family of nuclear enzymes that regulate the repair of DNA) and/or platinum chemotherapy drugs may improve survival. These treatments are still only available within clinical trials but, should they be successful, could offer further treatment options for this sub-group of pancreatic cancer patients.
What we need now is for pancreatic cancer patients to be routinely tested for BRCA1/2 in order to determine whether they will benefit from targeted therapies such as PARP inhibitors. Plus, we need to raise awareness that there is a clear association between the BRCA1/2 mutations and pancreatic cancer.

What to do if you feel you may have a genetic mutation?

If you have cancer that runs in your family and you are concerned you too could develop cancer, then it is a good idea to speak to your GP. They may refer you for a genetic test which will tell you whether or not you have one of the inherited cancer risk genes.

Usually, if you have had a relative who has had cancer then they will need to have had the genetic test before any healthy relatives like you. If their genetic test is positive, then you can have the test. It could take a few weeks for the test results to come back.

EUROPAC (European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer) are also available to identify gene changes that may increase risk in these families.

A positive test means you have a faulty gene that raises your risk of developing cancer, as medical history, lifestyle and your environment along with your genes will also influence any future health risks.

If you have one of the faulty BRCA genes, there is a 50% chance you will pass this on to any children you have and a 50% chance that each of your siblings also has it.

The genetics clinic will discuss with you how a positive or negative result will affect your life and your relationships with your family.

Today came the remarkable news that researchers at Johns Hopkins University in the USA , and published in Science have developed a non-invasive blood test that can detect 70% of eight common cancers, including pancreatic cancer – even at the early stages.

They have even said that this is relatively inexpensive; the same cost of a colonoscopy for example.

The way the test, known as CancerSEEK, works is to detect DNA mutations and proteins that are ‘shedded’ by the tumours into the bloodstream. The challenge has been that these circulating DNA mutations and proteins are small and have previously been difficult to detect, especially in early tumours.

8 out of 10 patients are diagnosed with pancreatic cancer when it has spread to other parts of the body making the disease incurable, so we desperately need better ways to diagnose pancreatic cancer earlier to give patients the best chance of survival.

This blood test is a really exciting development. While a 70% success rate needs to improve, the fact that it can detect some early pancreatic cancers could be game-changing for patients.

This test will be particularly important for those who are suffering vague but persistent symptoms (such as early pancreatic cancer patients) and gives a potential tool for GPs to rule cancer in or out.

The caveat is that it now needs to be tested on people without a cancer diagnosis to see if very early disease can be detected even when patients have little or no symptoms, and for it to be used as a screening tool in those at high risk of developing cancer.

As a rare 10 year pancreatic cancer survivor, I will be watching developments closely, but I feel buoyed by this news that there could soon be a non-invasive and inexpensive blood test to detect pancreatic cancer early and ultimately improve survival for patients.

On Wednesday 10th January, I drove up to Oxford at the request of Channel 5/ITN News to give my comments for the evening news bulletin on a memo leaked by the Head of Chemotherapy at the Churchill Hospital, Oxford to the Times newspaper.

In the memo, Dr Andrew Weaver blamed a 40 per cent shortage in specialist cancer nurses trained to administer chemotherapy medication as the reason why the Churchill Hospital would be considering delaying the start of chemotherapy treatments by up to four weeks and/or rationing treatment by reducing the number of cycles [of chemotherapy] patients receive.

While the Churchill Hospital denied that any current chemotherapy services have been affected by staff shortages, I firmly believe that this is a shot across the bow from senior clinicians to highlight the fact that teams are stretched almost to breaking point.

The UK has some of the lowest cancer survival rates in the developed world. Pancreatic cancer patients, who are already on the back foot because of delays in diagnosis, will be further disadvantaged if they have to delay starting chemotherapy treatment or their treatment is rationed. This will undoubtedly have an impact on life expectancy and possibly quality of life, as chemotherapy can also help palliate the symptoms of the disease, such as pain.

What we have to remember is that behind every statistic, there is a patient; a mother, father, brother, sister, aunt or uncle, all of whom are struggling to cope with a cancer diagnosis and do not need additional anguish over whether they will be able to receive the appropriate treatments in a timely manner. Treatments need to be started as soon as possible to help prolong life, relieve symptoms and for patients to spend more time with their families.

The Churchill Hospital example may well be the tip of the iceberg and one wonders whether similar conversations may be being had at other cancer units across the UK.

The Health Secretary Jeremy Hunt and the wider government needs to tackle this immediately before this becomes a national and more severe issue and before cancer patients die prematurely.

On March 7-8 we exhibited at the Health and Wellbeing at Work show at the NEC in Birmingham. This gave us an opportunity to discuss pancreatic cancer with Occupational Health (OH) professionals from organisations large and small from across the UK.

We stressed the lack of public awareness about pancreatic cancer (70% of the UK population does not know where their pancreas is) and that in the UK, 40% of patients are under the age of 69 and some therefore will be in the workplace.

We talked about our Pancreatic Cancer Aware campaign and its dedicated website and how some of those assets, including videos, can be used on their company intranets and in their internal health and wellbeing emails.

The Pancreatic Cancer Aware Campaign

We talked about how, by utilising Pancreatic Cancer Action’s comprehensive awareness materials, we can try to improve early diagnosis by making the UK workforce more aware of the disease and its symptoms and risks.

We had an excellent response and have had a lot of requests for literature and for us to visit some of the organisations to talk to their staff. Most Occupational Health professionals told us that they have not ever had an awareness drive on pancreatic cancer and that they would be keen to do so in the future.

This for us is a fantastic opportunity to work with Occupational Health professionals to communicate our messages about pancreatic cancer to their teams and to staff within their organisations.

If you would like us to visit your company to talk about pancreatic cancer or provide your Occupational Health team with pancreatic cancer awareness materials, please get in touch.

A recent study by Cancer Research UK* has found that for all cancers, the number of cancer cases and deaths will increase by 2035 by 42% (cases) and 30% (deaths).

However, what we do see is the rate of incidence for all cancers combined falling in women by 0.11% and in men by 0.03% by 2035 and, for most cancers, the mortality rate is decreasing too. (The age standardised rates describe cancer incidence and mortality with reference to a standard population and accounts for such things as differences in age and composition of the population).

One of the cancers that is bucking that trend in terms of reduced rates of incidence is pancreatic cancer. Instead of seeing rates falling, the rate of incidence of the number of cases is predicted to be up by nearly 5% in women and nearly 7% in men between 2014 and 2035.

The rates of incidence for cancers such as bowel, bladder and lung are predicted to reduce significantly over the same period.

So what does this mean? Well the number of actual cases of pancreatic cancer (which is a different number than the rate at which they occur) is likely to top 15,000 by 2035 and the numbers of actual people dying is predicted to be over 13,000. See the tables below:

That’s a predicted increase of nearly three per cent per year in the number of cases and over two per cent per year for the numbers of people dying from pancreatic cancer.

With an increasing population size and an ageing population, it is not surprising to see that the number of people affected by cancer is increasing over time. What is concerning is that the rate of incidence and mortality for other cancers is predicted to decline by 2035 and in some cases significantly. One of the exceptions is pancreatic cancer.

And, while the rate of mortality (death) is influenced by the incidence (cases) rate, other factors will influence these numbers such as how successful the healthcare system is in diagnosing and treating the cancer in question.

We know that pancreatic cancer is diagnosed late, when it has already spread to other parts of the body. This, and the fact that we have few treatment options available to patients, means that we will only continue to see increasing death rates from pancreatic cancer to 2035 and beyond. This is unless we see noticeable improvements in diagnosis and treatment which will only happen when we get greater focus on and funding for the disease.

After nine years of managing to avoid it, it has happened to me. It has now been confirmed that I have Pancreatic Exocrine Insufficiency and I am awaiting an appointment with my specialist HPB dietitian to advise me on a prescription of the digestive enzyme drug CREON. This diagnosis is not something that is unusual for those of us who are/have been suffering pancreatic cancer, but what is unusual is that I have not been diagnosed with it before now.

Pancreatic Exocrine Insufficiency (or PEI for short) is where there has been a change in the flow and amount of pancreatic juice (which contains enzymes to break down foods such as fat, protein and carbohydrate). Without enough digestive enzymes, the food can pass through the digestive system without being properly broken down and absorbed.

In my case, they symptoms of this condition included more frequent and looser bowel movements and periods of sudden evacuation (rush to the loo time!), terrible bloating and sometimes debilitating stomach cramping, especially just after I had eaten, plus the odd bout of wind. Some people with PEI will lose weight, but not so in my case. Perhaps it is because my level of PEI is moderate: on the scale at 118.

The test I had was a poo test known as a faecal elastase test. The ranges of normal to moderately or severe insufficiency are below:

Now, many people in my position (who have had surgery to remove a pancreatic cancer tumour) will develop PEI from the outset. Others tend to find they either don’t get it at all or, like me, it creeps up on you over time. After my surgery, I was left with around 20% of the head of my pancreas and this has kept going like the clappers for years.

I had noticed the odd change in bowel habit about 18 months ago but, because these were infrequent and had no pattern, I just thought it may be something I was eating that didn’t agree with me. I had always (since my operation) had difficulty digesting red meat and had side effects from eating strong cheeses like Stilton, but removing these foods from my diet seemed to sort the problem. Until recently.

The last 3 months or so have been really trying as my symptoms took a noticeable turn for the worse. To say I have been struggling with day-to-day activities is an understatement. It has been difficult to concentrate and the fear that I may not get to a loo in time has been immense. My coping strategy has been to consume a lot of Imodium and to plan journeys expertly according to where facilities are.

What is interesting is that pancreatic insufficiency may be having an effect on my glycaemic control which could in part explain why, as an insulin dependent diabetic, my blood sugars have been difficult to control over the past year or so.

I am looking forward to starting on the digestive enzymes despite the fact it is yet another drug I have to take and that I will have to remember to take it with any meals and snacks I eat. It is likely that I will have to adopt this for the rest of my life – a small price to pay for surviving pancreatic cancer.

The 30th August 2007 was the day I was diagnosed with pancreatic cancer. A disease I hadn’t ever heard of and, at the time, I had no real understanding of what I was about to endure. I had no idea that the survival statistics were so poor and that I was then facing only a 3% chance of surviving beyond five years.

But, survive I have, and more years than many others who have faced the same diagnosis. That’s because I was diagnosed in time for surgery to be possible. My surgery was a distal pancreatectomy and splenectomywhere I lost 80% of my pancreas and all of my spleen. Of the two main surgical procedures, mine was the lesser but it still took five hours to perform and several weeks to recover from. I followed this with six months of chemotherapy including two drugs: gemcitabine and cisplatin then a further 5 weeks of chemo-radiotherapy.

It was nearly a year’s worth of treatment: weekly appointments with the oncologist, then daily appointments at the radiotherapy centre. I was becoming used to a kind of institutionalised lifestyle and the support of my medical team along the way.

Then it all stopped and I began to feel the loss of that support and framework to my life. It was a good thing to rid myself of so many hospital appointments but nevertheless I felt a kind of emptiness which was compounded by an overwhelming sense of what had just happened to me. I suppose had I been a soldier back from Afghanistan, I may have been labelled with Post Traumatic Stress Disorder – something I can really relate to.

However, with the strength that my family and friends have given me, I have been able to cope (more or less) with the impact of the pancreatic cancer diagnosis and the resulting survivor’s guilt and was helped in a major way through my founding of and working at Pancreatic Cancer Action.

My work at the charity is a daily reminder that life isn’t all about me – there are many touched by this disease who are far worse off than I am and it is my life’s work now to try to ensure many more are diagnosed sooner so they too can have the same outcome as me.

I now, more or less, live a normal life, but there are some things that have changed since my surgery. I am insulin dependent diabetic – type 3 – a type I had never heard of (and some doctors are unaware of this type too!). I need to be on permanent antibiotics now I don’t have a spleen, and I can suffer the effects in wintertime of the peripheral neuropathy which is a hangover from my chemotherapy treatment.

I am currently being investigated for new changes to bowel habit and being fast tracked (this time!) for urgent referrals for tests. It is a bittersweet irony that on the anniversary of surviving nine years following pancreatic cancer, I am awaiting the results of a CT scan to see if anything nasty has returned. The fear of this is as real as it has been throughout the past nine years and I guess it is something that will never leave me. Hopefully it will only mean I will now have to take CREON with meals to help me digest food properly – something I have managed to avoid so far!

But I am lucky, I have been here to see my two boys grow up into fine young men, enjoy lots of family holidays to lovely places including Australia, Egypt and Africa, go on walks in the woods with my dogs and to still have the support, love and company of my true best friend, my husband Phil.

As I enter the 10th year of my diagnosis, there is a lot to reflect on and a lot to be thankful for. Next August will mark my 10th anniversary and, statistically, only 1% of us diagnosed with pancreatic cancer ever live that long.

When you’re at the beginning of your ‘journey’ with pancreatic cancer, it almost seems inconceivable that you will hit those milestones and become one of those slim statistics. My husband’s positive attitude and mantra that I was a statistic of one: my disease, my treatments, my outcome. This helped me mentally get through and to believe that I could be one of the 3% (to survive 5 years) and now to believe I will make up one of the 1% to live for 10 and more years. Here’s hoping!

I joined the first formal Board meeting for Pancreatic Cancer Europe (since its new legal status as a not-for profit registered in Brussels) which was held in Liverpool in early July.

I have been a founder member of Pancreatic Cancer Europe (PCE) which is a multi-stakeholder platform made up of clinicians, patient groups, researchers, industry, journalists and EU policy makers. Our aim is to improve diagnosis and care for patients across the EU and to ensure that there are no inequalities in that care no matter where patients reside.

There are four main work streams: Awareness and Diagnosis, Registries, National Support and Research and I am proud to be the lead for the Awareness work and being able to bring some of the knowledge and experience of my work with Pancreatic Cancer Action to PCE.

Funded by pharmaceutical companies Celgene and Shire, we have been in operation since November 2014 and have already produced several documents and awareness materials including a micro site, symptoms posters, 10 key facts and GP leaflets on diagnosing pancreatic cancer.

Thankfully, PCE covers a geographical Europe and not a political one so, being from the UK, my role as a Board member is currently unaffected by the Brexit decision.

Having a legal entity for the organisation is an important step for PCE as it gives it a formal structure and increased credibility and legitimacy within the EU. This foundation will underpin the four work streams (Awareness and Diagnosis, Registries, National Support and Research) and will enable us to apply for funding from a wider group of sponsors than present. It will also enable funding from the EU itself for future projects – all with the aim of improving outcomes for pancreatic cancer patients across the EU and the UK!